Dear Momz,

I am not a doctor nor do I have enough knowledge to adequately address the issues you raise. However, I am worried for you. I did not have any of the issues you raise, except one, which I'll address below.

ALL of the issues you are bringing up are very, very serious and should be talked over with your doctor, and maybe, I hate to say this, but another doctor, like another surgeon for a second opinion. It is not "bad" to ask your doc if there is another vascular surgeon to check you out for a second opinion, or ask your hospital if they have a patient advocate or other hospital / patient liason to ask if they have another surgeon who can check you out just to make sure things are progressing normally.

That said, swallowing difficulties (which many of us TOSers have from TOS and not related to the surgery) can be caused via surgery due to complications with the "phrenetic nerve." This is a VERY serious situation. Cutting, nicking, damaging, swelling of the phrenetic nerve controls swallowing and breathing, I think.

The whiteness of the hand could have to do with possible blood clotting, as that can block the circulation. So maybe you need to have some MRIs with fluid imaging right away - I don't know, I am just thinking off the cuff here.

Now, when I had surgery, I did have shortness of breath, still do, did before surgery, and it was / is due to "adelectosis" (sp?) which is where parts of the lung stick together because they haven't been pushed to be opened (like any exercise) and / or they were deflated and/or there has been some fluid. I don't know if you've gotten your surgical report, yet, but some of us have a lung that is deflated, some it is merely pushed far to the side, but I think in all of our cases the lungs are screwed with, for lack of a better medical term, during surgery. So the docs told me to really push my lungs open to breathe, and when I first had my surgery (and thereafter) I forced myself to walk the halls with my IVs in hand, many, many times, to fight having fluid collect. So this is another point where your doc(s) need to check those lungs to see if they are clear.

Numbness around an incision (for a small area anyways) is normal, I had it with my cesarean, with my breast surgery and also with the TOS surgery. I also had a burning nerve come down my arm and to my thumb. All went away. A year later I am not numb anywhere on any of those surgical sites. But, to the extent that you describe, well, I don't know if that much area is "ok", or if that is indicating some nerves were bothered / irritated during surgery. My surgery was under the armpit.

The bit thing after surgery is not to make more scar tissue. I was not able to do any PT because I had such high fibro pain going along, and I couldn't travel to / fro the PT. And then you have to be so careful with the kind of PT you have - is it the Edgelow or Butler kind? But if one can do PT it does make one better than those who can't. Is your doc recommending any PT? Both Edgelow and Butler can be ordered via mail.

The only times I had that awful "novocaine" feeling, and it was uncomfortable, was first when I had a scalene block, and then when I had a normal root canal and my tongue / face swelled up like a mess. I think both were a reaction (bad) from lidocaine and marcaine. Can you ask your doc if any "caines" were used in your surgery, which I think anyone with TOS and / or RSD may have reactions to? This is all just stuff I have heard or talked about with other TOSers, and like I said, I'm not a doctor nor do I want to cause you any problems. I'm just adding this for you to consider. And I do care and feel really bothered that you're having so many apparent problems. See, with my surgery, it was the fibro that freaked out, but my arm / hand, TOS symptoms, including headache, all seemed to calm down for at least a year.

Well, that's all I can handle for now, back to bed for me, God bless you and please keep us posted.


Best thoughts and wishes, Tam